New York medical marijuana law: Young epileptics among many left behind

Oliver Miller has become the face of the fight for New York state’s medical marijuana law. Now 16, he suffered an in utero stroke that affected his brain stem and left him with myriad disabilities, the most dangerous of which is severe epilepsy, or seizure disorder.

On his bad days, his seizures number more than 100. His desperate parents tried just about everything to find some relief for him. He’s currently on a cocktail of four drugs, plus an IV infusion every three weeks.

They have tried special diets and even a medically implanted device, and his condition worsened. “That’s just from the seizures,” his mother, Missy Miller, says. “That says nothing about the side effects or the complications he’s suffered from the side effects of the medications.” Those are as bad as if not worse than the seizures.

But one thing might help him: medical marijuana. And in New York state, whose medical marijuana program launched Jan. 7, that means Oliver Miller’s story — and those of many other New York residents — should have a happy ending.

But it has not had one. New York’s law is so restrictive that campaigners say it has done little or nothing to alleviate patients’ suffering. They still can’t get the medicines they say they need.

Oliver Miller’s story is a long and complicated one. It began with a glimmer of hope. Missy Miller came across a study showing promise for severely epileptic children who take CBD, a nonpsychoactive, cannabis-based compound, which appeared to reduce the number of seizures in children who weren’t responding to traditional treatments.

“It was August 2012, when I first heard about it,” she says. “And then I was like, ‘Oh, my God, let’s just do this. Let’s get this.’ Then I heard it’s not legal here. How is that possible? How is it that you’re allowed to do this in Colorado but you’re not allowed to do this in New York?”

And so her battle began. From that moment on, her life revolved around two things: caring for her son and lobbying everyone to get a medical marijuana law passed in New York. She met with then–state Senate Majority Leader Dean Skelos, once a major opponent to the law, who changed course when he met Oliver Miller and saw him seize 15 times during their short meeting. She repeatedly made the three-hour journey to the capital, Albany, with her son in tow, speaking to anyone in the press prepared to listen.

In June of 2014, victory appeared imminent. The state legislature approved the Compassionate Care Act, bringing medical marijuana to New York. But it would take 18 months to implement. That was a crushing blow to Missy Miller and the thousands of patients, some of them terminal, who fought so hard for the bill.

According to her, a lot can go wrong in 18 months for a child like her son. “I can’t even begin to list the skills that he lost in 18 months,” she says. “He used to be able to pull himself up to stand and walk around the perimeter of his play area. We took the walls down because he can’t pull himself up to stand and walk around anymore. He used to have about 150 words. He has maybe 30 words now. We’ve almost lost him a couple of times just to status seizures in general, where the seizures don’t stop and we have to give him such an extreme amount of medication.”

Politicians argued that the legislation had to be written thoughtfully, the covered conditions chosen carefully, possible future pitfalls avoided. And according to Julie Netherland of the Drug Policy Alliance — part of a coalition that lobbied to get the act passed — final passage was reliant on Gov. Andrew Cuomo, who wasn’t completely convinced.

“It was first introduced in 1997, so it’s been around for a long time,” she says. “When it became clear that we had the votes in the Republican-controlled Senate, the governor’s office began to engage in the process.” With just over a week left in the legislative session, Cuomo introduced a set of amendments that turned it into one of the most restrictive bills of its kind in the country.

Only 10 conditions were covered. Only five strains of cannabis-based oils could be sold in dispensaries, but no whole plant or anything smokable or edible. Only five companies are approved to manufacture the oils and sell them. Oliver Miller’s condition is covered, but none of the 20 dispensaries in New York state are in Long Island, where the Millers live. Doctors who want to be able to certify patients to use medical marijuana are required to take a four-hour course costing $249. “Those were all restrictions put in by the governor,” says Netherland. “I would say that gutted the bill.”

So far, 226 physicians in New York state have taken the course and qualified. Oliver Miller’s doctor is among the vast majority who have not, and she says she will not — meaning that, for all Missy Miller’s fighting, her son cannot get the medical marijuana he needs.

She says, “The first thing she asked me when I suggested she take the course was, will I have to be put on a list? And I can respect her concern. The last thing she wants is a bunch of people making appointments for marijuana recommendations.” She says that even at NYU Langone Medical Center, which is one of the premier epilepsy centers in the country and is involved in trials for medications containing cannabis, doctors will not offer medical marijuana recommendations.

In fact, the list of doctors approved to make medical marijuana recommendations is controlled by the state’s Department of Health (DOH) and operates on an opt-in system. Doctors do not have to be listed. But according to Netherland, that’s only one of the misconceptions many doctors have about the new program. “I think part of it is that it’s unfamiliar to them, and a lot of physicians don’t know much about the program or don’t have good information about the program,” she says. “They’re not taught about medical marijuana in school, it’s not FDA approved, so it’s different than what they’re used to.”

It’s also still illegal at the federal level.

It’s a frustration Donna Romano, 60, knows all too well. A veteran, she lives in Syracuse, New York, and has suffered from multiple sclerosis, another covered condition, for 17 years. She uses marijuana to help stop muscle spasms in her legs. She has been fighting for medical marijuana for more than three years, traveling to Albany to lobby legislators. She was there in 2014 when the bill was passed, and in New York City when it was finally signed. “Now we’re at the point where we should be able to obtain our medicine,” she says, “and I don’t have a doctor that will write a recommendation for me.”

Just who is in charge of educating physicians about the use of medical marijuana and the ins and outs of the new law? It depends on whom you ask. Missy Miller says the responsibility should lie with the state. “The DOH has a responsibility to inform their physicians,” she says. “They had 18 months to do that. In all of that time, start sending letters out to your physicians saying, ‘The medical marijuana program is coming. Here are the different types of medical marijuana. Here are the conditions. This is the way this can benefit your patients.’ Generate some interest, generate some comfort among these physicians.”

The DOH has left it up to the patients and the organizations licensed to manufacture and sell the products. State Assemblyman Richard Gottfried, who introduced the first New York medical marijuana bill, in 1997, as well as the Compassionate Care Act, says that may be the case. “This is America. We can’t force a physician to prescribe a particular kind of treatment,” he says. “I think part of it is up to patients and other physicians to persuade more physicians that this is something they should do, that they should offer to their patients.” He believes doctors will sign up but admits that “it will take time.”

That’s little comfort to Missy Miller, who watches her son’s condition deteriorate almost daily. “I’m trying to do this legally,” she says. “I could very easily do what everybody else in New York is doing. Half of these parents are ordering it online like everybody else is. You can go online and order Charlotte’s Web or Palmetto, Harmony. They’re selling this CBD oil everywhere as hemp.” But, she concedes, “if I’m not going to be able to find a doctor, then I will break the law. I will order. I will do what I have to.”

Romano says she has no choice but to continue to use illegally while she hunts for a doctor who will write a recommendation for her. But, she says, “education is going to be key with the doctors. We need to have, probably, a mounted effort to reach the doctors the way pharmaceutical reps reach the doctors and tell them, ‘This is what’s so great about this medicine’ and such. The doctors are either not knowledgeable or they’re fearful of repercussions.”

The man who wrote, sponsored and shepherded the Compassionate Care Act on its difficult legislative journey says the job is far from done. Gottfried has a series of bills ready to go before the legislature that would expand the list of covered conditions, remove many of the restrictions and allow doctors easier access to the program. Ultimately, he says, real change will happen only at the federal level. “We’re only having this discussion because the federal government completely irrationally continues to put marijuana in a legal category with heroin,” he says.